Anonymous
Post 09/15/2020 21:15     Subject: Re:I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:He has Ulcerative colitis.


No way - NP with UC


I actually had a friend who was diagnosed with this at a young age. Wondering if op is ashkenazi/Jewish.


I don’t think those are typical UC symptoms (family member with UC)


Children often present, at least initially, with different IBD symptoms than adults. My son was diagnosed at age 6 by a rheumatologist because he didn't have GI symptoms, but swollen, painful joints and random fevers. He wasn't an unusual case.


OP here we are not Ashkenazi/Jewish, they have not mentioned UC but I can ask. Thanks


Hi, I'm the PP you're replying to. We aren't Ashkenazi/Jewish, either and have no family history, but 2 of my 3 sons have Crohn's. If they're still thinking autoimmune, then IBD (Crohn's/UC) is probably part of what they're considering. I forgot to add above that my son also had a very elevated CRP. I hope things get sorted out soon; I know the medical waiting, especially when your child is ailing, is terrible. Hugs.
Anonymous
Post 09/15/2020 21:11     Subject: Re:I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Glad he is doing well Op. What a blessing to have Children's National so close. Glad you all are headed home.
Anonymous
Post 09/15/2020 18:21     Subject: Re:I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Anonymous wrote:OP here, so.....He has been fever free for 24 hours. I should have looked at what my last update was before I started typing this, but they have 3 things they are looking at 1) tick illness 2)autoimmune disease 3) MIS-C which is covid related. We are off isolation as 2 tests here at children's came back negative. He is still getting 2 IV antibiotics. They are still awaiting results of some labs. The main team is going to talk to the infectious disease team today to talk about discharge since he is pain and fever free and follow up out patient. So we will should know today if he's going home today or tomorrow or needs to stay longer.


I came on DCUM specifically to see if you posted an update. So glad to read he is doing better. Hope you get to the bottom of it.
Anonymous
Post 09/15/2020 17:25     Subject: Re:I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:He has Ulcerative colitis.


No way - NP with UC


I actually had a friend who was diagnosed with this at a young age. Wondering if op is ashkenazi/Jewish.


I don’t think those are typical UC symptoms (family member with UC)


Children often present, at least initially, with different IBD symptoms than adults. My son was diagnosed at age 6 by a rheumatologist because he didn't have GI symptoms, but swollen, painful joints and random fevers. He wasn't an unusual case.


OP here we are not Ashkenazi/Jewish, they have not mentioned UC but I can ask. Thanks
Anonymous
Post 09/15/2020 17:24     Subject: I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Anonymous wrote:OP, glad your son is doing better. It will be annoying if you don't find out the cause but if he recovers it may never happen again. My sister had a similar situation as a teen--high fever, high white blood cells, joint pain, headaches, other stuff--and wound up hospitalized. Their best guess was endocarditis but not really sure if that was it or why she got it. A few days later she was better, a few weeks later she was fine. Never happened again. A plus was that she met lots of nice doctors, a cute med student, etc. and it really piqued her interest in medicine--now she is a doctor herself! Best wishes that your son makes a full and easy recovery.


OP here, this is a cute story! While we were here they are doing a study trying to find a way to test covid in kids through saliva vs nose swap. I asked my son if he wanted to do it and he jumped at the idea he could be "part of science" he had to spit into a tube a few times and that's it. He told his friends if they had to be tested for covid in the future and only needed to spit in a tube vs a nasal swap they could thank him lol.
Anonymous
Post 09/15/2020 17:21     Subject: Re:I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:OP here, so.....He has been fever free for 24 hours. I should have looked at what my last update was before I started typing this, but they have 3 things they are looking at 1) tick illness 2)autoimmune disease 3) MIS-C which is covid related. We are off isolation as 2 tests here at children's came back negative. He is still getting 2 IV antibiotics. They are still awaiting results of some labs. The main team is going to talk to the infectious disease team today to talk about discharge since he is pain and fever free and follow up out patient. So we will should know today if he's going home today or tomorrow or needs to stay longer.


I’m the person who has been sent a link, and who posted about my daughter with HLH and liver failure. I’ll be super curious to hear what you learn about MIS-C, esp as Covid tests (nasal and antibodies) for our child were negative. We still don’t know the etymology of her illness, and even if it was a rare Kawasaki, Stephens Johnson’s, or MIS-C. the docs seem convinced That it couldn’t have been related to Covid because of negative tests but no knowing the trigger is really hard.

To answer to the person asking about the SJS trigger they don’t know. But the SJS - even though it would it have been quite severe SJS - was the least of our worries.


I'm also a parent of a child with sHLH and liver failure as well as other organ involvement, triggered by refractory SJIA. (OP, I don't think your child has SJIA, so don't go down that scary rabbit hole on the internet. SJIA has a pretty distinctive fever pattern that you haven't described).

Did you find things that worked for the liver? We have good HLH management with Gamifant, but aren't finding liver solutions.


OP here, Covid test negative x 4, antibody test also negative. From my understanding MIS-C forms in children exposed to covid but didn't show symptoms and could test positive or negative
Anonymous
Post 09/15/2020 17:19     Subject: I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Anonymous wrote:
I just want to note that it's perfectly possible your child has had Covid, and is now suffering from complications, but the tests are coming back negative because the infection itself has passed. I didn't see if they had tested for antibodies too, but all these tests can be negative and the patient can still suffer from Covid complications. It has happened before.



OP here, I 100% think my daughter, wife and myself had covid back in January/February my son did not get sick. I think this is MIS-C due to him having covid and being asymptotic. That said I think we will leave the hospital with no diagnosis. I had antibodies tested and they were negative months after the illness.
Anonymous
Post 09/15/2020 15:50     Subject: I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
OP, glad your son is doing better. It will be annoying if you don't find out the cause but if he recovers it may never happen again. My sister had a similar situation as a teen--high fever, high white blood cells, joint pain, headaches, other stuff--and wound up hospitalized. Their best guess was endocarditis but not really sure if that was it or why she got it. A few days later she was better, a few weeks later she was fine. Never happened again. A plus was that she met lots of nice doctors, a cute med student, etc. and it really piqued her interest in medicine--now she is a doctor herself! Best wishes that your son makes a full and easy recovery.
Anonymous
Post 09/15/2020 14:46     Subject: Re:I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Anonymous wrote:
Anonymous wrote:OP here, so.....He has been fever free for 24 hours. I should have looked at what my last update was before I started typing this, but they have 3 things they are looking at 1) tick illness 2)autoimmune disease 3) MIS-C which is covid related. We are off isolation as 2 tests here at children's came back negative. He is still getting 2 IV antibiotics. They are still awaiting results of some labs. The main team is going to talk to the infectious disease team today to talk about discharge since he is pain and fever free and follow up out patient. So we will should know today if he's going home today or tomorrow or needs to stay longer.


I’m the person who has been sent a link, and who posted about my daughter with HLH and liver failure. I’ll be super curious to hear what you learn about MIS-C, esp as Covid tests (nasal and antibodies) for our child were negative. We still don’t know the etymology of her illness, and even if it was a rare Kawasaki, Stephens Johnson’s, or MIS-C. the docs seem convinced That it couldn’t have been related to Covid because of negative tests but no knowing the trigger is really hard.

To answer to the person asking about the SJS trigger they don’t know. But the SJS - even though it would it have been quite severe SJS - was the least of our worries.


I'm also a parent of a child with sHLH and liver failure as well as other organ involvement, triggered by refractory SJIA. (OP, I don't think your child has SJIA, so don't go down that scary rabbit hole on the internet. SJIA has a pretty distinctive fever pattern that you haven't described).

Did you find things that worked for the liver? We have good HLH management with Gamifant, but aren't finding liver solutions.
Anonymous
Post 09/15/2020 14:41     Subject: Re:I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:He has Ulcerative colitis.


No way - NP with UC


I actually had a friend who was diagnosed with this at a young age. Wondering if op is ashkenazi/Jewish.


I don’t think those are typical UC symptoms (family member with UC)


Children often present, at least initially, with different IBD symptoms than adults. My son was diagnosed at age 6 by a rheumatologist because he didn't have GI symptoms, but swollen, painful joints and random fevers. He wasn't an unusual case.
Anonymous
Post 09/15/2020 14:18     Subject: I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong

I just want to note that it's perfectly possible your child has had Covid, and is now suffering from complications, but the tests are coming back negative because the infection itself has passed. I didn't see if they had tested for antibodies too, but all these tests can be negative and the patient can still suffer from Covid complications. It has happened before.

Anonymous
Post 09/15/2020 14:13     Subject: Re:I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Anonymous wrote:OP here, so.....He has been fever free for 24 hours. I should have looked at what my last update was before I started typing this, but they have 3 things they are looking at 1) tick illness 2)autoimmune disease 3) MIS-C which is covid related. We are off isolation as 2 tests here at children's came back negative. He is still getting 2 IV antibiotics. They are still awaiting results of some labs. The main team is going to talk to the infectious disease team today to talk about discharge since he is pain and fever free and follow up out patient. So we will should know today if he's going home today or tomorrow or needs to stay longer.


I’m the person who has been sent a link, and who posted about my daughter with HLH and liver failure. I’ll be super curious to hear what you learn about MIS-C, esp as Covid tests (nasal and antibodies) for our child were negative. We still don’t know the etymology of her illness, and even if it was a rare Kawasaki, Stephens Johnson’s, or MIS-C. the docs seem convinced That it couldn’t have been related to Covid because of negative tests but no knowing the trigger is really hard.

To answer to the person asking about the SJS trigger they don’t know. But the SJS - even though it would it have been quite severe SJS - was the least of our worries.
Anonymous
Post 09/15/2020 12:41     Subject: Re:I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Also glad to hear the update xo
Anonymous
Post 09/15/2020 11:43     Subject: Re:I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Anonymous wrote:Juvenile idiopathic arthritis?


+1
Anonymous
Post 09/15/2020 11:05     Subject: I’ve been in the hospital for 2 nights with my 12 year old and they don’t know what’s wrong
Thx for the update OP. I'm so glad he is doing so much better!

I hope you get an answer, as the not knowing would be really hard, but thank goodness for the resilience of kids.